So close and yet so far!

[angiek]

After 3 years on prednisolone for PMR you will all know how happy I was to be down to 1 mg a day. Nearly a year of yo-yo ing between 8 and 3, finally my body was happy with 1mg and the end was definitely in sight!

Then out of the blue I’ve landed in hospital twice in 6 weeks with pneumonia ( or another as yet not diagnosed lung condition)

But that’s not the worse bit, this morning the nurse came to dish out my medication and amongst all the other drugs were 5 little white suspiciously ‘pred looking‘ tablets! ‘ We don’t have any 5 mg prednisolone, so we’ve had to give you 5x1mg’ she said brightly. ‘Oh that’s okay I don’t need 5, I’m currently right down to 1mg daily’ says I -slightly perturbed at the mistake. Turns out the dose has been upped last night by the consultant.

Obviously I do want to get better and go home, but family and friends cannot understand why this was such a big disappointment to me 🥲 It’s just another drug in cocktail, right?

I know you will all know exactly how I feel about it ☹️

[cranberryt]

Hopefully it’s just s short term temporary bump. I flared after my covid jab and had to triple my dose from 3 to 9. It took me 8 weeks to return to 3, but in the grand scheme of things, that was a short blip. Hope they get you all healed up and home soon!

[SnazzyD]

It’s fairly standard to treat chest infections with short term steroids with antibiotic cover. It’s often a lot higher than 5mg. Looks like this is one of those spanners in the works of your plans because the chest complaint needs to take precedence with higher doses than you’d like right now. Also, the consultant may well have wanted to make darned sure you don’t get an adrenal crisis because it’s not every day that you get this kind of physical challenge so a precautionary approach is wise.

[angiek in reply to SnazzyD]

Yes- of course I know it has to be and I hadn’t even thought about the adrenal crisis- just worked so carefully to get here, I’m sure it will happen once I’m back to ‘normal’ 🥴

[SnazzyD in reply to angiek]

Knowing it’s for the best doesn’t mean it’s any less frustrating!

[Meggsy in reply to angiek]

Angiek, OH and I both had an infection last January (not Covid) when we were continually coughing night and day - exhausting! GP put us on 50mg pred for 5 days. I was on 5mg at the time and there was no problem going back to 5. I was cautious and went to 25 for one day, 10 then back to 5mg. I must admit I was horrified at first when GP suggested this treatment. OH dropped straight back to zero. I’m sure when your chest condition is under control you will be back to 1mg in no time. All the best - Marea 🌻

[Kendrew]

Hi angiek.I understand your frustration but for different reasons. I too tapered right down... to 2½mg, and was stable on this dose. Then I had a significant flare and found myself back up at my starting dose of 15mg! Taken me 8mths to taper back down to 8mg and doing it very slowly. The sense of disappointment and frustration was overwhelming though. All that hard work and for what? It taught me a lesson about patience and pacing though!

That was my situation but yours is completely different.

I would imagine you feel a bit like you've lost control and all that effort and 'success' with the tapering has failed.

Firstly, I don't think any of us are ever really in control of this condition.....it's unpredictable and behaves erratically so all we can do is manage it on a day to day basis. Secondly, having to increase the steroids is not a sign of failure but an opportunity to learn more about how to manage them more effectively. Steroids are not really the enemy here...PMR is!

No one wants to be on steroids, but without them, we'd be in quite a mess. Try not to feel too down..... unfortunately these little setbacks will happen but you will be able to taper down again.

Like Snazzy says though, it's important you let your current health situation take precedent.....disappointing as it is to be back up at a higher dose, you have to do whatever will bring about the best outcome...... you certainly don't want to experience adrenal crisis....this can be a life threatening situation and needs to be avoided if at all possible.

My father also had PMR and I could never understand his utter joy every time he dropped down another mg of pred! Nor did I appreciate why being on 1mg was something to get so excited about! How I wish I'd taken the time to understand the condition more back then because now I completely understand that feeling.

I think unless you've experienced what being on steroid medication means, you won't be able to understand or appreciate those little 'triumphs'.

Wishing you all the best and a steady recovery.

[angiek]

Thank you you’ve completely understood how I feel, and it will help to think of steroids not as the enemy, but a powerful ally which I’m lucky to have! 😘

[PMRpro Ambassador]

Stop being disappointed - he needs to do it to compensate for possibly inadequate adrenal function and as Snazzy says, it is very common these days to use steroids along with abx for chest infections of all sorts.

If you are lucky you will be back to 1mg as soon as the infection is done and dusted.

[Telian in reply to PMRpro]

My GP increased my pred dose because I had dust on my chest from house renovations. Not a chest infection as first thought.

[Constance13 in reply to Telian]

😂😂😂

[Telian in reply to Constance13]

How are you Constance? 🌺

[Constance13 in reply to Telian]

Getting old! Can't move too well now, PMR relatively in griff, arthritis really bad. I can walk round the flat but am in a wheelchair outside.

I'm extremely lucky that David can cope pretty well with me, so life carries on. I read a lot and keep my mind as active as possible on the internet.

Hope your life isn't too stressful atm. Keep healthy and happy. 😎💥💐💐

[Telian in reply to Constance13]

So sorry Constance. You sound exactly like my hubby. He’s deteriorated since his numerous falls but have to make the best we can - he’s in a lot of pain. It’s a blessing you’d hubby is such a good help. This move to be near family has been too - the house will soon be ready - got some god people working for us too. Thinking of you. xxx🌺

[Constance13 in reply to Telian]

Forgot for a minute you'd had a big move. Great everything turned out OK. So good you have helpful people around. I do have home help so at least most of the housework gets done. xxxx

[Telian in reply to Constance13]

Taking much longer due to Covid ( think that’ll be the excuse for ever now!).

That’s good ‘you haven’t got to look at the dust! I just give it a quick once over to keep it down but waste of time really. It’s no fun this getting old malarkey……🌺

[Constance13 in reply to Telian]

Tell me about it!😂 Aren't we lucky though to be able to communicate our difficulties/successes/thoughts to people all over the world who 'understand' - help, commiserate etc?

👏👏👏👏 to HU!

[Telian in reply to Constance13]

Absolutely Constance. 🌺